ME Association Guidance: Reducing the risk of Covid-19 and PVFS/ME/CFS | 19 May 2020

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

This morning we are launching a new leaflet and an update to add to the range that we have consistently published since the very beginning of the coronavirus pandemic and national lockdown.

1. Reducing the risk of Coronavirus infection if you have ME

Leaflet Extracts:

People with ME/CFS are already in a vulnerable/high risk group when it comes to catching this infection – mainly because it is highly likely to cause an exacerbation of existing symptoms, or a more persisting relapse.

The general risk from catching coronavirus also increases further if you have any of the factors below that are being identified as likely to make people more vulnerable to the infection. In particular:

  • Age over 70 years,
  • Male,
  • Obesity,
  • Black, Asian or minority ethnic background,
  • Having other chronic medical conditions – e.g. coronary artery disease, diabetes, respiratory disease,
  • Vitamin D deficiency.

In addition, there are a number of social, work, and demographic situations which make people more likely to catch the infection:

  • Having a high-risk occupation – working in health and social care, retail, and public transport.
  • Spending all or much of your working time indoors away from home where a lot of people gather e.g. working in shops or offices.
  • Living in a part of the UK where there have been a disproportionate number of cases of COVID-19.
  • Living in a residential or care home.

It’s important for everyone with ME/CFS to do all they can to reduce the risk of catching this infection. This means adopting a way of living that is based on individual circumstances and individual risk factors.

  • Almost zero risk – staying at home, not going anywhere, and not meeting anyone else.
  • Low risk – staying at home for most of the time but going out for a walk or an occasional visit to the shops.
  • Higher risk – leaving the house and going to work or school, or using public transport, or living with people who are going to work or school or using public transport.

The Ten-Point Guide

In this free leaflet download is a 10-point guide to the most important measures that will help to prevent you catching this infection.

The basis for this guidance is very simple. People who are infected pass on the virus in tiny droplets that are spread from the mouth during coughing, spluttering and even breathing.

Viral droplets can also be passed on by people who are displaying no obvious symptoms. So, a friend, or neighbour, or caller at the door, who looks and feels well could still be infected and spreading the infection.

These virus laden particles then land on surfaces where they remain (for up to 72 hours on some hard surfaces) and can be picked up if someone touches the infected surface. An infected hand or finger then touches the eyes, mouth or nose and the virus enters the body.


Although the advice here has changed to Stay Alert in England, other regions of the UK are still advising people to Stay at Home.

For most people with ME/CFS, Stay at Home will be the most important thing you can do – as this should eliminate almost all contact with people who are infected and surfaces that are infected.


The guidance here is to keep at least 2-metres from other people. But there is good research evidence to indicate that tiny viral particles can travel further than 2-metres, especially when an infected person is coughing or spluttering.

Consequently, I have chosen to try and keep a 4-metre distance where possible. And if you do meet people that you are not living with, try to avoid direct face-to-face conversations…

2. Coronavirus (COVID-19) and ME/CFS – Weekly Update

Leaflet Extracts:

The current situation

Having reached the peak of infection in mid-April, the number of people being admitted to hospital with COVID-19, along with the number of deaths, is now gradually falling.

Hopefully, this trend will continue for the next few weeks and months until we reach a very low level of residual infection in the community.

However, we are then going to enter a position where a low but hopefully manageable level of infection persists, possibly with periodic spikes in certain parts of the country.

This situation will almost certainly remain for the rest of 2020, and probably well into 2021 – until a vaccine becomes available, or the disease goes away, or largely disappears.

Although vaccine development research is proceeding at a very rapid rate in several centres, I don’t think we are going to see a safe and effective vaccine being made available for public use until 2021. And while the chances of success appear to be fairly good, there is no guarantee that we will have a vaccine.

The whole country is going to have to live with COVID-19 for the foreseeable future. And this means adjusting the way we all live according to the level of individual risk we face. We are all on a steep learning curve here and at a national policy level there is going to be quite a lot of trial and error before we get this right.

Easing the lockdown

The second item of news, which follows on from the progressive fall in numbers over the past two weeks, is the way in which a very cautious easing of Lockdown has been announced.

The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.

But none of these changes are going to have any significant affect on most people with ME/CFS – unless someone is planning to return to work or school.

As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory – the government has simply issued guidance on returning to school for certain groups of children.

My understanding is that nobody is going to be in trouble, or even fined, if they choose to continue to keep their children at home.

For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.

Employers have a clear duty under Health and Safety legislation to provide a safe working environment.

The Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10.00pm.

If you have concerns about working arrangements you should discuss them with your trade union or professional body representative…

The MEA Coronavirus (COVID-19) and ME/CFS Leaflet Range

ME Awareness Month – May 2020

The Lost Years

Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.

The ME Association

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